Finally have an answer, don't know how to feel about it.

My wife and I just received a diagnosis for our youngest daughter. She was born 11 years ago with multiple developmental delays. The doctors had never been able to determine why, so we have lived with a big question for a long time. We had another test done back in July and recvd results a week ago.

Sat down with geneticist today to find out that she has Pitts Hopkins Syndrome. It is a relatively new diagnosed syndrome that has been discovered in children and young adults. Since it is so new there are no in depth studies as to what the future holds. A part of me is glad we have an answer but another part of me is saddened that we know now that since it is a mutation of a gene there is no cure.

I always held out hope that through therapy and hard work that maybe we would see some improvement as she gets older but this is not to be. While her quality life is good and she is happy and enjoys school and her family, she will never be a " typical kid".

Going to take a break for a bit to clear my head and work on the next step for my daughter and the family.

Stay strong, my prayers for you and your family! And the only steps to take, is that one which keep you and your family being able to have time for each other...

My prayers are with you, your daughter, and family. Please keep us posted.

As the others said my friend, prayers an best wishes to you, an yours. Ya know how to reach me if you if you need to bend an ear.

Sirscrapalot - Keeper of the traveling cooler.

You and your family will b in our thoughts and prayers

I will also be praying for you and your daughter. Keep up the good work and keep on showing her how much you love her and everything else won't matter.

Thoughts and prayers with your little girl, you and your family Brass...My wife works with Special Needs Kids for our school district and things we take for granted can be a real challenge at times.

Bc, sorry to hear that about ur daughter. We all take for granted that when we have children everything is going to be fine with them. I have always thought that nothing like that would ever happen to my family. We have a 2 year old and am tring for another. That is something I remember think about the whole time my wife was pregnet and the first few months after she was born. I hope that all goes well for u and ur family and I will defentally keep u and urs in my prayers. I couldn't imagine finding out or going through something like that. I do wish u the best of luck though. I know I am fairly new here, and we have not really talked or anything, but if u ever need some advice from an old fool, or just want someone to talk to, I am a good listener, (that is if u want to talk to someone u don't know).
Again, going to keep u in my prayers and thanks for sharing something that personal. God bless
Email-mseashell1991 @ gmail dot com

Sorry to hear. Hope they find a way to treat it soon. I'll add you and your family in my prayers.

My son went under the knife at one day old. it was scariest time of my life but it was over in a month (a never before seen maelrotation lots of questions and reviews lots and lots of follow up). the scar across his stomach is forever.
As a father I feel your frustration but never forget the many blessing you have now.
no matter what you are still the best father that girl could ever ask for.
prayers and best wishes

BrassCatcher:
You also have my support and prayers in your pursuits for the welfare of your daughter. As you brought this to our attention, I'm justly amazed at the above response from a group of otherwise "greasy and calloused" junkmen (speaking of myself here...haha) and their heartfelt concern and consideration offered.
Not surprisingly, the salt of the earth is found; not in the highminded and proud, but in the humble and simpler spirits that roam the dumpsters and curbs of this planet. I'm proud to be associated with you all.

I wish all the best to you and your daughter.

I just want to say, Keep Faith In God, and believe in him, when a adult is sick its not as bad, but when a child that has not a good start is sad, and I beleive in God Name that things will get better for You and Your Family and espeically Your Daughter.

Hugs Man...

In the scheme of things the illness of your child makes my issues very small indeed. I have had a very full and great life. I have done most every thing I ever wanted to do and seen most every thing I ever wanted to see.

My sincere wish, hope and, prayer is that you and your child may, at very least, do the same.

mcw

Keep your head up, Brass. One of these days, we scrappers are gonna start discovering cures...

Thank you one and all for the thoughts and prayers. While one door closed others are opening for her. Now that she has a diagnosis there are therapies that are recommended for kids with this syndrome. Water therapy, music therapy and therapy involving horses. All three of these are things that have always made her laugh and smile.

Sorry for the delayed response, my wife and I have been busy researching and reading as much as we can about Pitt Hopkins Syndrome. We found a family support group and a forum that we joined for parents with children who have these types of rare afflictions.

Once again thank you all for the support, well wishes and prayers. I cant recall ever being so proud of being a part of something as i am of being a member here.

I missed this somehow when it was originally posted.

Thoughts and prayers to you and the family. Smother that child with love Ray.